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  • SOB while lying down?

    Hi everyone

    I have a question..... For the past few months I have noticed that many times, I get short of breath while lying down on my back. I can't breathe and I have to sit up and even then it takes a few minutes to get breathing normal again.

    Does anyone else experience shorness of breath while lying down?

    Thank you for any relpies, I appreciate it

    Hugs -- Eileen
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

  • #2
    Re: SOB while lying down?

    Yes Eileen,
    That happens to me too – sometimes even in my sleep, and it wakes me up. If it hits while I’m sitting down watching TV it usually passes rather quickly, but sometimes when it wakes me up it’s like I’m in a deep stupor. I’m disoriented and I move like I’m stuck in a vat of molasses. It’s a trial just to sit up on the side of the bed.

    Eileen, I have to tell you a story. When I was little – real little – my mother ran a candy store with a soda fountain, and a young Irish girl used to come in every morning for breakfast on her way to work. For some unknown reason, but as things often happen, my mother then in her thirties, and this slip of a girl probably not yet twenty, became fast friends. Her name was Eileen, but I was so young I couldn’t quite get my mouth around it and wound up calling her ‘Ninny’.

    We remained fast friends all our lives. I even remember her and one of her girlfriends taking me to the country with them for the week-end when I was about eight or nine. Sunday morning we all went to the near-by church. Ninny said I could wait outside if I wished, or I could go inside and observe without participating – which is what I chose to do. Well, the sermon was an anti Jewish rabble rouser and Ninny was so upset we all stormed out of the church, - but we didn’t leave. At the end of services when everybody was just in front of the church Ninny grabbed the preacher and in front of the whole congregation gave him what for.

    The last time I saw Ninny, she was an officer in the corporate headquarters of J C Penny in New York with a rather large staff. She was retiring, and my mom was gone already, but I felt the need to let her know we still cared. She moved to New Brunswick, Canada and we corresponded for awhile, but eventually lost track of each other. I expect she went to visit my mom again. I can’t help it, but when I see your name I still get a very warm feeling inside – I hope you don’t mind.

    Well, enough reminiscing, pleasant as it is - -
    Burt

    Comment


    • #3
      Re: SOB while lying down?

      What a wonderful story Burt, thank you for sharing it. I enjoyed reading it. I like Ninny's style, especially when she gave that preacher the what for -- yeah! Heaven is blessed and I'm sure, not boring

      Thank you for your reply, I was wondering if anyone else had experienced this as well.

      Hugs --

      Eileen
      49 yrs. old
      Diagnosed at 31.
      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
      My brother passed away suddenly at 34 yrs old from HCM.
      2 teenage children, ages 17 and 15.

      Comment


      • #4
        Re: SOB while lying down?

        Eileen -

        I have non-obstructive HCM so can’t speak from experience about symptoms of HOCM.

        But, something you should be doing is keeping a keen eye out for evidence of fluid retention which could be symptoms of Congestive Heart Failure. This is often first seen in sudden weight gain and then swollen feet and ankles. An easy test is to use your index finger to press the flesh around the area of the ankle. Skin there should be drum tight. If you leave a dent that slowly rebounds you may be retaining fluid. Drs. will inspect your neck for distended veins and listen to your lungs for “crackles” two tests not easily done by the patient.

        In May of this year I had two consecutive evenings of being unable to remain flat on my back in bed. I was literally leaping out of bed just to catch a breath. I had to sleep with three pillows under my head, then the second night upright in a chair. I felt absolutely fine during the day when upright.

        I went to the Dr. who quickly identified this as Congestive Heart Failure and I was off to the hospital. I was put on diuretics and in 3 days lost nearly 8 ltrs of fluid. I tend to gain weight every winter. The extra 15lbs was noticed but ignored.

        It is reported on all of the health web sites that CHF is reaching epedemic proportions in this country as the baby boomers age. More than a half million (and growing) new cases every year.
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant

        Comment


        • #5
          Re: SOB while lying down?

          Hi Boz,

          Yes, I kinda thought it may be a beginning sign of congestive heart failure. I have very little fluid build up in my lower legs, however, I do gain between 2 to 3 pounds a day and it is mostly in my abdomen.

          I told my cardiologist this and she said that it is normal.
          -- It is
          Of course, I do not know how much she knows about HOCM.
          Anyway, my cardio said that there does not seem to be enough fluid build up to do anything about it -- so I don't know.

          I also have to sleep on an incline, and I mostly sleep on my right side. Now, it has become too uncomfortable to sleep on my left side (maybe my ICD has something to do with that too as well as the HOCM).

          Thank you for taking the time to reply, I appreciate it

          Hugs -- Eileen
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.

          Comment


          • #6
            Re: SOB while lying down?

            Eileen.

            I have been following your thread about SOB while lying down with interest. While I do not feel a lot of SOB in a prone position, I almost always sleep on my right side (this started before I had my implant), and I have used 3 pillows for a very long time. It just feels better for me.

            I too tend to gain weight around my abdomen. Sometimes it can be 3-5 pounds from one day to the next. It has lasted as long as 3-4 weeks and can be as short as 1-2 days. So far neither the cardio nor my PCP feel like it is anything to worry about, but when my pants won’t fit right from one day to the next it is a bit disconcerting. You are the only other person I have heard from who retains fluid around the middle too. Hopefully when I see Dr. Lever in December he can offer me some good advice on what I should do.

            Peace,

            Leon
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness

            Comment


            • #7
              Re: SOB while lying down?

              Just another note on this.

              Once one has been diagnosed with CHF, a gain of 3 lbs in 24hrs is cause for concern. In my case, I will double my daily dose of Lasix - 20mg becomes 40 mg. My weight is very rarely steady, varies by 2 to 3 lbs (up and down) every day.

              After an uncomfortable episode, you might want to review what was eaten that day. Watch that sodium intake.
              • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
              • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
              • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
              • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
              • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
              • 2011: Brigham & Women’s - Medtronic ICD implant

              Comment


              • #8
                Re: SOB while lying down?

                Hi Boz,

                Funny you should say that..... I am always more short of breath, especially while lying down, after I eat something with alot of salt. I just had some pretzels and I am short of breath and I cannot lay flat.

                However,I was not diagnosed with congestive heart failure, only HOCM. The doctors said that I will have HOCM symptoms if I don't take any medication (such as Cardizem), which I don't because I don't like the side effects. Maybe the 2 cardiologists I have seen (they are in the same office) do not know much about this. They are not HCM specialists.

                Darn it, I was hoping this was not it. Now I have to watch my salt and I love salt too. But right now, it is difficult for me to breathe well.

                Thank you for your information.

                Hugs -- Eileen
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.

                Comment


                • #9
                  Re: SOB while lying down?

                  Hi,
                  It’s me again. I was retaining a lot of water in my legs, my ankles were like grapefruit and my feet swelled so much I could only wear slippers. I also had a lot of water in the trunk of my body. When I put my pants on they were very tight, but as soon as the water got squeezed out of the way I was fine.

                  Then one day my legs and feet went back to normal (on 120mg Lasix and 50mg Aldactone) but a visit to my cardiologist uncovered crackling in both lungs (CHF). He did an EKG to find out if it was HCM or yet another blocked artery (they were clear.) We added Metolazone, but I only took one dose before I wound up in the hospital again. My kidneys had shut down – but luckily they were restarted with 18 to 20% function. After a week and a half I was home again, with all diuretics and Potassium banned. My legs are again flooded, my pants are tight, I have SOB bad plus some occasional angina.

                  I just hope it’s not going to be another ride on the merry-go-round. I see my PCP tomorrow and have to make appointments with my cardiologist and nephrologist. I guess I’ll also call my insurance high risk caseworker and give her a status – although I sent them all a six page status report when I got back home the day before Thanksgiving.

                  Just thought I’d let you know you guys are not alone with the water problems, but please be careful with the diuretics, as they are very hard on your kidneys. Although it sounds like bringing coals to Newcastle, remember to drink an abundant amount of liquids. It helps to ‘flush’ the system.
                  Burt

                  Comment


                  • #10
                    Re: SOB while lying down?

                    You 're not alone and I am sure there are many more of us with the fluid problem. I think it often gets easily overlooked and underestimated as to the problems that can result if left unnoted and under treated for too long. Excess fluid is a strain on the heart and lungs not to mention our mental outlooks.

                    In my case I had been suffering from bouts of CHF for several years without having it diagnosed properly and this was well before my HCM ( obstructive) was diagnosed. Usually the ER docs would say it was bronchitis or pneumonia sometimes with and xray and sometimes without . It was not for years later that I looked at my records and also noted that each time the radiologist would comment on the enlarged heart as well as read the x-ray. Funny , no one ever mentioned that info to me , nor was there follow up.

                    I understand that we all retain fluid in a different pattern. When you know yours , it is important to be attentive to it. Using a measuring tape around ankles , calves and feet is good practice and around girth as well . You will be surprised that even though there is often no visual signs or minimal palpable edema , there is often measureable edema. Your biggest friend on a day to day basis is a good scale . Remember you devise people , no fancy fat measuring electronic type. It will send an electric current through and can interfer with your devise.

                    A 2-3 pound per day weight gain needs to be addressed if you have ever had a CHF incident. Chf is never cured only maticulously managed and it can improve with proper management.

                    If you eat the same way every day you weight should not vary by much . I usually give it the second day or that afternoon of the first day . If it is still up , higher or my belly feels tight( I don't measure any more , I just know my self alot better), then I consider an increase in my diurets.

                    Before myectomy , and when it was finally noted that I had CHF, I took 140mgs-180mgs of Lasix and an additional hit of Zaroxylin on occasion. Now I take 40mgs of Lasix and occasionally more. Most of my fluid has always been in my gut. ( The liver becomes engorged with fluid laden blood and thus the resulting swelling of the abdomen occurs.) Remember when there is extra fluid there is also a back log of circulating blood as the heart becomes overwhelmed and pressed to get everything going around the body in the right direction. At night as you lie down everything is compressed and the diaphram, which separates your lower abdominal organs from the lung area , also gets pushed up causing increased pressure upwards against the lungs. Results in difficulty taking in a good breath. That is why you jump out of bed to get some air. You are really getting gravity to help drop everything lower so you have some space to inhale. Often you will notice that sitting forward with your shoulders hunched, elbows on the table, affords you a similar relief. I still require 3-4 pillows and sometimes I have to dust off my foam rubber wedge and use that with a pillow.

                    With HCM , we must be very carefull. A dehydrated left ventricle is as dangerous to the HCM heart as too much fluid is to a bout of CHF and an impact on the overworked HCM heart. Extreme care with the use of diuretics is not to be underestimated. Salt use and management as well . Get to know yourself and pay very very close attention to the details of your fluid managearial skills .

                    Hope this shared experience and information has helped.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: SOB while lying down?

                      Hi Largehearted,

                      Leon, your symptoms sound about the same as mine. As in your case and mine, my cardiologists -- 2 of them said it was nothing to worry about.

                      Boy, that really gets me, I paid those doctors alot of money (I do not have insurance) and I hear "You have concentric HOCM" -- uh, I already knew I had HOCM. And I told both of them how I just cannot breathe well at night and they said that it is normal for this condition. They never once looked into testing for CHF. They looked at my ankles and said I was fine. They did not ask me anything about my diet at all, no mention of salt or fluid intake.

                      I think they just do not know very much about this heart disease.

                      Thank you for your information, it helped me
                      And I hope you get good answers and the best information from Dr. Lever.

                      Hugs -- Eileen
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Re: SOB while lying down?

                        Hi Pam,

                        Thank you for your information. It has helped me to better understand this. I told the cardio about my abdomen swelling every night, and that I gain between 2 to 3 pounds of weight everyday and she said -- her quote "That is normal, it is just a nuisance."

                        Both cardiologists did not tell me much of anything. I asked her about pulmonary edema, she said no, I asked her about my EF being 84%, she said "it is high." She said that I could live for years like this.

                        Like I said in my post to Largehearted, they never once mentioned anything to me about my diet or my salt or fliud intake. I told them that many times I will have a lot of trouble breathing, mostly at night, they said it was normal for my condition. They just sent me on home.

                        I think both cardiologists I have seen are idiots.

                        Thank God for this website, now I can learn more about this and hopefully not suffer so much everyday. I have to go to the store and buy some low sodium items, everything I have here is loaded with salt.

                        What is a CHF incident?
                        The only thing that comes to mind is about 10 months ago, at night, I did not have any anxiety before hand then, I started to feel short of breath, then it got worse. I could barely breathe, and then my heart started beating really fast (probably because of anxiety at that point). And this lasted about and hour and a half. I thought that maybe it was a panic attack, but I take .5 mg of Xanax at about 8:00pm so I wasn't sure if it was panic.

                        Thank you again Pam

                        And thank you to everyone else, your input is very appreciated.

                        Hugs -- Eileen
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

                        Comment


                        • #13
                          Re: SOB while lying down?

                          Hi Burt,

                          I also hope it is not another ride on the merry-go-round for you.

                          Having the kidneys shut down is scary, I'm glad they fixed that for you.

                          I hope you feel better and are able to get rid of some of the fluid without having any other problems.

                          Hugs -- Eileen
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #14
                            Re: SOB while lying down?

                            Eileen

                            I gain on a daily bases and sometimes i get it off or i should say some of the fluid comes off and i do get short of breath more than i care too, i do have CHF my BNP was 686 last month, you do have to watch the salt and the fluid intake i drink no more then a liter and a half a day and i threw my salt shaker away, anyone that eats at my house has a salt free diet and believe me it won't hurt, they don't seem to mind or at least they are not saying anything anf yes i have had to most nights sleep with 3 pillows or sleep in the recliner

                            the SOB gets sooo bad my family says that is enough you are gasping for air go sit down, i was doing laundry yesterday and thought a couple of times i was going to pass out, i think though i was just trying to do too much, trying to get the christmas things out, and doing laundry and not resting alot, i hope they find out what is going on with you

                            Eileen i know some doctors don't like to think we get CHF they say it is different but my symptoms are real and i was a very hyper person before i was diagnosed with this disease, i felt myself getting tired very easily though from about 10 years ago and i just chalked it up to getting older, but when my mother in law was working circles around me i knew there was something wrong being she was in her mid 60s and i had been in my early 30s , but if i were you i would get to a HCM specialist and see what they have to say on all this

                            Shirley
                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                            Comment


                            • #15
                              Re: SOB while lying down?

                              It sounds to me like your doctors don't really know how to treat you properly. The symptoms do sound a lot like CHF. This bothers me though:
                              The doctors said that I will have HOCM symptoms if I don't take any medication (such as Cardizem), which I don't because I don't like the side effects. Maybe the 2 cardiologists I have seen (they are in the same office) do not know much about this. They are not HCM specialists.
                              Do they think if you take the meds you won't have any HCM symptoms? Meds aren't a cure. They can reduce symptoms, but they can't "fix" you. Good luck.

                              Reenie
                              Reenie

                              ****************
                              Husband has HCM.
                              3 kids - ages 23, 21, & 19. All presently clear of HCM.

                              Comment

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